March 28, 2012 - The first day I logged into the bfs chat room, about 10 mins after logging in, someone promised me that she would make sure I was alright until the day I got cleared by a neurologist.

Everyday for 8 months this person spent hours in a chat room, that she ran for almost 2 years at her expense, spoke to me on the phone for hours, again at her expense and sometimes put me before her own family when I was at my worst, there were periods where if someone had off strung a rope up and tied a noose, I would happily have tied it round my neck and jumped, she knew when these days were, without me even telling her. I couldnt get a neurologist appointment for 8 months, 6 months into my wait, i was at my worst, unselfishly she asked for my neruo's name and number - she called him and demanded i get in sooner. I was put on a cancellation list.

that person was leanne, mommylondon to most here.

To the members of the chat room, and some here, will know I had a falling out with her, and posted that people should stay away from the chat room, and that it was a cult. this was my immaturity and selfishness, while no one will ever claim to be able to diagnose you in the chat room, you will get comfort, good information, reassurance that the symptoms you have are common and most of all, someone that cares. Leanne has a passion for helping people, and a 'bed side manner' that no neurologist will ever give. In reality, I couldn't have made it through without Leanne and an honourable mention to Jet, Misty, and Greg, Carmen, Cat and Fran. And despite my recent bad mouthing, after having a conversation with her, I realise that the only motivation she has to help people, is to make sure that they are not without support, like she was in the beginning. I didn't just bite the hand the fed me, amputated it at the elbow. I'm sorry.

I also apologise for bashing this forum in general. People need it, this came as a revelation to me after being reminded of a tragic event. If people need reassurance, or a starting point, please reach out to someone, anyone wither here or in the chat. BFS and the corresponding ALS worry is not worth your time and anxiety. It cost me 2 jobs. I couldnt function, I have heard it cost another their life. It doesnt have to be this way.

take advantage of the chat room, you wont need to wait for a response, or to be approved for the board. Leanne / Jet/ Misty are in there pretty much 20 hours a day. someone will be willing to talk to you, and help with any fears.

I really appreciate everything people contribute to this board. I am having another flair after 3.5 years of twitching and a clean emg 1.5 months ago.I am in India for work and have no support but this board. Thank you lord for these people and this outlet.

wow! I just saw this post, and I understand that you mean SO MUCH too BFSers out there! Must be very good for you to read this thankfullness. You have also given me hope by recognizing symptoms and telling me they got better with time.Good to know there is this forum and chat to get support when everything feels unbearable. I think it is so important because not many of us have people around us that can understand much of this..